My Story: Social Media Is a Weapon To Fight Chronic Pain

As a chronic pain sufferer (and patient advocate), I know well the power of social media.

Pain patients know what it’s like to be alone. Unless you have chronic pain disease, no matter how much people try, they just don’t know what it’s like.

Gracie Bagosy-Young

I will say that social media has changed my life. It allows me and others like me who are battling chronic pain to congregate, discuss, advise, sympathize and share information.

I directly administer 75 social media sites – with different topics and disease states – and I participate in hundreds of others. Facebook, LinkedIn, Twitter are among those that I use. Facebook is my preferred site to meet and talk with other people.

I learn and advise about treatment options, insurance issues, tips and tricks that help people to navigate their lives in pain. I share information that I read. I’ll share this column.

Why?

Because it helps me when I’m helping others. As a patient advocate and consultant I remember well the reaction I had when the doctor told me I had Complex Regional Pain Syndrome (CRPS);

I said, “What’s that?”

And the trouble was then that not many people could tell me. I began to research it – in books, online, with doctors – and I learned some things.

But what I really needed to do was learn from people like me – patients who suffer from it. What’s it like? What can I do? Will I get better?

By engaging people through social media, I began to get the perspective I couldn’t get from the doctor. I began to understand how to live with it.

And what a difference it has made.

There are 100 million of us who live in chronic pain – many of us suffer from more than one condition. The information we receive from the medical community and industry is often uneven and sometimes even inaccurate.

My own journey included trying PT/OT, exercise, yoga, meditation, meds, gels, creams, steroids, lidocaine infusions, cortisone injections, nerve blocks, a TENS unit, Calmare treatments, and transcranial magnetic stimulation with IV ketamine infusions to name a few. Along the way there were questions about the effect of the treatments, whether insurance would pay for it, other things I could try.

Some of the answers to those questions came from my friends on social media.

Now I want to make sure that you understand I’m not saying the ONLY information you should seek is that which fellow pain patients say. You need a good doctor, even a team a doctors! What I AM saying is that the doctor alone may not be enough.

As any pain patient will tell you, no one treatment ever works for everyone. There is no one size fits all solution. Pain behaves (or misbehaves) and responds differently.

It’s important to know that and to share that, which is what I do on social media. I share the information in a raw, unvarnished way. Telling the truth is my mantra. The truth isn’t always pretty, or easy to share.

In my social media groups, there are no rules except that I won’t tolerate drama or bulls—t. So, as I think about it, I guess there are two rules – no drama and no bulls—t.

You know that we pain patients hate the night. As a rule we have a hard time sleeping. It’s hardest at that time. Our loved ones – if we are lucky enough to have them (I am) – are sleeping which makes our inability to sleep frustrating. Actually, frustrating doesn’t even describe it. How can one put it into words? When you are rocking back and forth on the edge of your bed in pain wondering how you will survive until morning – that exceeds frustrating. That is when I turned to social media for support.

That’s a time when I’ll get up and get on social media and talk to my friends there. Not only are they available to you (because chances are they are having a hard time sleeping too), but they understand.

I appreciate the effort made by the author to reach out and help those who are suffering. The shear number of sites she belongs to brings me great concern. Anyone, weather a pain patient or someone calling themselves an Advocate needs to have training to recognize people who are distraught and or suicidal. Giving advice on medical treatments or on anything for that matter to someone who has experienced nothing but defeat, rejection or a number of negative experiences can lead to disastrous outcomes. I have suffered with a Chronic Pain condition caused by an incompetent doctor for 6 years, my first 2 years were physically, emotionally and mentally devastating. I gave suicide great consideration before coming to terms with my “new” life. I was depressed and vulnerable to someone’s good intentions that could have pushed me into a fatal situation. If any person believes they are wanting to give advice on medical treatments or on medical conditions thery should first seek training in areas of suicide prevention and awareness, understand in great detail the medical conditions they are discussing and communicate clearly that they are not a medical professional. Whenever someone post looking for advice for a medical issue you should end with “please discuss this with your doctor or health professional.” There has to be an awareness among all of those who Administer, Participate anor Post on support pages or blogs. The people who frequent these sites are in a fragile state, we must treat each person with care,respect and understanding. Administrators need to be mindful of those who are criticizing or demoralizing others in the group. They also need to understand the risk and possible liability of engaging in the diagnosis of medical conditions and treatments.

It’s important to remember that consumers are the experts on their own experience. By connecting that expertise through social media channels we can begin to ascertain what the lived experience is for persons who experience chronic health conditions. That mass of experience can help us to figure out where we need to be directing resources and information. There is a signal in this noise and it is talking to us. We really need to listen and be held accountable for hearing what real people with lived experience have to tell us. When we fail to do so, we have failed to do our job.

Great advice Gracie!
You sound just like me! I too am a patient advocate & am just starting to really get involved w/ social media as a way to spread awareness & education. I have been in the “pain game” most of my life & have learned (mostly the hard way!) MANY things that can help others, as well as myself. Right now my goal is to spread awareness about this whole RX mess of legit. & compliant patients not being able to get their badly needed meds.
I am calling this campaign, Suffering of Silence #sos as we BEG for those w/ the power to HELP us; but even though I feel that we are being heard, NO ONE (DEA, gov’t, etc..) is doing nor saying anything to stop it! So we are suffering of silence.

My other goal is to share TRUTHFUL & REAL info. about ALL treatment options instead of the misinformation that is being put out by those w/ their own agendas! ALL patients need to educate themselves on whatever condition they have & NOT just blindly trust doctors, after all no matter how high of a pedestal many docs feel they should be on; they are in fact, just HUMAN & what they do is called a PRACTICE for a very good reason!!

Would love to have anyone interested in helping me to help you to check out my facebook page called criminally inpain. I know that if enough of us join together, they will NOT be able to ignore our cries & will be forced to break the silence of our suffering!!!

Remember, All change begins when ONE person stands up & shouts, “ENOUGH”!!!